Indicators Used to Assess the Impact of Specialized Pediatric Palliative Care: A Scoping Review

Widger, Kimberley; Medeiros, Christina; Trenholm, Madeline; Zuniga-Villanueva, Gregorio; Streuli, Jürg C

doi:10.1089/jpm.2018.0420

Cited by 29 publications

(20 citation statements)

References 62 publications

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“…In order to undertake this research, we must first determine what outcomes are the most important to measure and develop appropriate tools to measure them. [104][105][106][107] Development of a core outcome set would meet this requirement. 108 This too will need to include the views of children and young people and their families, particularly if we are to address the methodological challenges that continue to affect the quality of research in this area, and the lack of evidence about whether specialist paediatric palliative care improves quality of life for children and their families.…”

Section: What This Review Addsmentioning

confidence: 99%

Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

et al. 2020

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Background: Specialist paediatric palliative care services are promoted as an important component of palliative care provision, but there is uncertainty about their role for children with cancer. Aim: To examine the impact of specialist paediatric palliative care for children and young people with cancer and explore factors affecting access. Design: A mixed-methods systematic review and narrative synthesis (PROSPERO Registration No. CRD42017064874). Data sources: Database (CINAHL, Cochrane Database of Systematic Reviews, Embase, MEDLINE, PsycINFO) searches (2000–2019) identified primary studies of any design exploring the impact of and/or factors affecting access to specialist paediatric palliative care. Study quality was assessed using The Mixed Methods Appraisal Tool. Results: An evidence base of mainly low- and moderate-quality studies ( n = 42) shows that accessing specialist paediatric palliative care is associated with less intensive care at the end of life, more advance care planning and fewer in-hospital deaths. Current evidence cannot tell us whether these services improve children’s symptom burden or quality of life. Nine studies reporting provider or family views identified uncertainties about what specialist paediatric palliative care offers, concerns about involving a new team, association of palliative care with end of life and indecision about when to introduce palliative care as important barriers to access. There was evidence that children with haematological malignancies are less likely to access these services. Conclusion: Current evidence suggests that children and young people with cancer receiving specialist palliative care are cared for differently. However, little is understood about children’s views, and research is needed to determine whether specialist input improves quality of life.

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Section: What This Review Addsmentioning

confidence: 99%

Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

et al. 2020

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Section: Introductionmentioning

confidence: 99%

“…A recent systematic review to identify and compare definitions of indicators used to assess the impact of specialised paediatric palliative care, reported limited participation of children in the interviews because of advanced disease. 21 Another review of instruments used to assess the impact of paediatric palliative care interventions equally noted the limited involvement of children in the reported data, and the paucity of data on psychometric properties used to assess the impact of paediatric palliative care interventions. 22 Consequently, an evidence-based, child-and familycentred conceptual framework of priority symptoms and concerns is needed to inform service development, adaptation and development of outcome measures, as well as ensuring child participation in care and treatment decisions to align care to their priorities.…”

Section: Introductionmentioning

confidence: 99%

Towards person-centred quality care for children with life-limiting and life-threatening illness: Self-reported symptoms, concerns and priority outcomes from a multi-country qualitative study

et al. 2020

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Background: Paediatric life-limiting and life-threatening conditions (life-limiting conditions) place significant strain on children, families and health systems. Given high service use among this population, it is essential that care addresses their main symptoms and concerns. Aim: This study aimed to identify the symptoms, concerns and other outcomes that matter to children with life-limiting conditions and their families in sub-Saharan Africa. Setting and participants: Cross-sectional qualitative study in Kenya, Namibia, South Africa and Uganda. Children/caregivers of children aged 0–17 years with life-limiting conditions were purposively sampled by age, sex and diagnosis. Children aged 7 and above self-reported; caregiver proxies reported for children below 7 and those aged 7 and above unable to self-report. Results: A total of 120 interviews were conducted with children with life-limiting conditions ( n = 61; age range: 7–17 years), and where self-report was not possible, caregivers ( n = 59) of children (age range: 0–17) were included. Conditions included advanced HIV (22%), cancer (19%), heart disease (16%) endocrine, blood and immune disorders (13%), neurological conditions (12%), sickle cell anaemia (10%) and renal disease (8%). Outcomes identified included physical concerns – pain and symptom distress; psycho-social concerns – family and social relationships, ability to engage with age-appropriate activities (e.g. play, school attendance); existential concerns – worry about death, and loss of ambitions; health care quality – child- and adolescent-friendly services. Priority psycho-social concerns and health service factors varied by age. Conclusion: This study bridges an important knowledge gap regarding symptoms, concerns and outcomes that matter to children living with life-limiting conditions and their families and informs service development and evaluation.

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“…However, in this study the cross-cutting barriers to developing the MCN highlighted in this study have impeded plans for evaluation, and other regions are likely to experience similar challenges because of the lack of standards and care pathways, and the resulting lack of agreed outcomes and robust measurement tools. 48 There were, nonetheless, missed opportunities to demonstrate early successes, for example measuring uptake of newly endorsed guidelines, such as a new guideline on rapid transfers for end of life care. It is important that, in the absence of appropriate measurement tools, networks make use of process as well as outcome data to assess potential changes in the delivery of palliative care, and to understand issues surrounding implementation.…”

Section: Discussionmentioning

confidence: 99%

Development of a Managed Clinical Network for Children’s Palliative Care – A Qualitative Evaluation

Papworth

Fraser

Taylor

2020

Preprint

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BackgroundConsistent evidence suggests that children’s palliative care is not equitable and managed clinical networks (MCNs) have been recommended as a solution. This study explored the perspectives of health professionals involved in the development of a children’s palliative care MCN, with an aim to identify barriers and enablers of successful implementation.MethodsThematic analysis of semi-structured interviews and focus groups with 45 healthcare staff with a role in developing the MCN or in the delivery of children’s palliative care (September 2019-March 2020). ResultsThe study explored health professionals’ perceptions of the MCN features that helped to formalise governance processes, establish training and networking opportunities, standardise practice, and improve collaboration between organisations. These include the funded MCN co-ordinator, committed individuals who lead the MCN, and a governance structure that fosters collaboration. However, the MCN’s development was impeded by cross-cutting barriers including limited funding for the MCN and children’s palliative care more generally, no shared technology, lack of standards and evidence-base for children’s palliative care, and shortage of palliative care staff. These barriers impacted on the MCN’s ability to improve and evaluate palliative care provision and affected member engagement. Competing organisational priorities and differences between NHS and non-NHS members also impeded progress. Training provision was well received, although barriers to access were identified. ConclusionsKey features of children’s palliative care can act as barriers to developing a managed clinical network. Managing expectations and raising awareness, providing accessible and relevant training, and sharing early achievements through ongoing evaluation can help to sustain member engagement, which is crucial to a network’s success.

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Indicators Used to Assess the Impact of Specialized Pediatric Palliative Care: A Scoping Review

Cited by 29 publications

References 62 publications

Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

Towards person-centred quality care for children with life-limiting and life-threatening illness: Self-reported symptoms, concerns and priority outcomes from a multi-country qualitative study

Development of a Managed Clinical Network for Children’s Palliative Care – A Qualitative Evaluation

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